omeprazole and alendronic acid ??

[CocoaChanel]

Something that has been puzzling me since I was diagnosed 10 days ago is why we are advised to start taking omeprazole and alendronic acid before we are sure we need it. Having read about the side effects I’m really not happy taking either so am holding off until I know more. Even though aspirin and ibuprofen have, in the past, given me stomach ache I have had no stomach ache with prednisolone so far. I have also, in the past, been told that I have dense, strong bones. That may have changed, of course, with age but until my dexa scan in two weeks I won’t know if I really need the AA ?

[Oxfordboy2]

Hi,When I was first diagnosed my rheumatologist asked my GP to prescribe omeprazole,Aladronic acid and Vitamin D plus calcium.This seems to be the standard that rheumatologists follow without taking into account individual patients needs.I had never had acid problems so decided to wait and see if I needed Omeprazole.Never offered a dexa scan so said no to AA.Spend lots of time outdoors so decided against Vit D and calcium.i did have a call from GP pharmacy telling me off for not following their advice but I decided to follow my instincts.I have had no ill effects from not following their advice but I must stress this is only my opinion,it may not work for everyone.I do like to keep my meds to a minimum not wishing to take something I do not need.

[123-go in reply to Oxfordboy2]

I had a call from the pharmacy querying why I wasn’t taking Lansoprazole. I told him why…no gastric issues, etc and in his report he stated, “The patient was coherent and spoke in complete sentences.” Made my day 😂😂.

[CocoaChanel in reply to 123-go]

🤣🤣 that’s funny but also hurts. I’m resigned to being viewed as an old biddy when I feel no different inside. Amuses me when asked if I’ve got the internet - I was using computers when we were working on punch cards!

[Nextoneplease in reply to CocoaChanel]

It would be funny if it weren’t also a tad tragic! My favourite is when a kind person asks “do you have access to a mobile phone?” - when I’m clearly phoning them from one ! 😂

Essential to retain a sense of humour 🧘‍♀️

[PMRpro Ambassador in reply to Nextoneplease]

To be fair - I have 2 phones, one is an ancient "burner" phone (though really no such thing here, you can't buy a SIM card in Italy without registering your tax number and all the systems for tax, vehicle licensing and all else are cross linked) and I did used to take a degree of satisfaction in saying no, I couldn't send them an image of the problem!!! I also. on principle, get quite stroppy about so-called intuitive stuff that is FAR from intuitive. I've never used punch cards but we had home computing in the early 80s and I ran my business by email fairly early on. So it isn't as if I don't know how to use a computer - but there are a lot of people with a mobile phone who can't use 90% of its features. Or like me, don't WANT to use half of them. And the keyboards are so b£**dy fiddly.

[CocoaChanel in reply to PMRpro]

As they keep say - we’re all different 👍. I love my phone. I’ve stopped carrying a handbag. I pay for everything in wallet. All my cards and store cards are on it. Use it as a sat nav and the interactive ordnance survey map is a godsend for walks etc. How did I ever manage without it?? 😂

[PMRpro Ambassador in reply to CocoaChanel]

I've quite got the hang of my phone - but not ready to use it to pay yet, Not available here from my bank actually but I only have one card that I use here, No store cards, not much of a "thing" here, My car sat nav is awful but haven't worked out how to use google maps - and I drove from northern Italy to Scotland without sat nav! Round here google is AWFUL!!!

[HeronNS in reply to PMRpro]

They say that using GPS causes part of our brain to atrophy. I don't know how that would matter to people who can't find their way out of a paper bag anyway, but for folk like me who are slightly directionally challenged it's probably best to keep on using the little grey cells.

My daughter used GPS to find her way to a job interview in another city, allowing herself masses of extra time. The instructions were so faulty she ended up being a couple of minutes late and so stressed and, as she put it, off her game, she did not get the job. They called her in for the summer to replace the person who had actually got the job because he was off sick, so she must have been high up. Big tech is not all it's cracked up to be. Although I suppose humans grumbled about written language replacing memorization the same way....

[PMRpro Ambassador in reply to HeronNS]

What I dislike about sat nav is that it is fiddly to see the overview at any point. I always have a map in the car with me. And the sat nav in the car is desperately inflexible. Where the old Garmin got the message after a short time that I had left the route it was following and looked at the logical alternative, the car doesn't adapt, tells you to do a u-turn on a motorway and insists you turn into non-existent roads!! And it is a sod to turn off - so I rarely turn it on unless desperate. OTOH, they shoud be so useful when alone as I always am and my daughter with ADHD says it saves her sanity!!

[Oxfordboy2 in reply to 123-go]

That did cause me to chuckle also.My own experience came In January this year when I had a Pet/CT scan.I hopped onto the bed easily enough in front of the radiographer but upon finishing the scan he asked me if I needed help getting off.Had I really aged that much in 45 minutes,I think not.

[123-go in reply to Oxfordboy2]

So funny 😂😂!

[PMRpro Ambassador]

Very much our point! The Recommendations/guidelines mention them with caveats - but many doctors, especially in the UK and USA, just automatically write scripts for them in the belief that prevention is better than cure. Here in Italy, there isn't the same emphasis on the PPIs unless you are taking other medication that require them (NSAIDs for example). And we get very regular and easy access to dexascans.

The problem with both bone density and gastric inflammation is that you may not notice a problem, I have never taken a bisphosphonate after a dexascan at the start showed my bone density was fine - after 15 years on pred, last year a spinal x-ray showed a compression fracture. Another member tangocharlie developed multiple spinal compression fractures a year or two ago. She had also never taken a bisphosphonate as HER dexascan results were - and are - like mine apparently OK. They don't always tell the whole story.

[piglette]

Mindless doctors who think PMR = steroids + Omeprazole + Alendronic Acid without questioning it. I had big fights with my GP on Alendronic Acid, every time I talked to him, as I had a good Dexascan result. Each time I used to think I had won, but then discovered I had not. Luckily a rheumatologist backed me up eventually and my doctor has gone silent.

[Charlie1boy]

I wasn’t prescribed omeprazole at diagnosis, and never had any problems throughout nearly eight years on pred. However, my GP did prescribe Alendronic Acid, and made no mention of a dexa scan. After some eighteen months on this Forum, I had learned much more about some the issues with Alendronic Acid, and pestered my GP to come off them. About that time, I was on 7mg of pred, and the GP relented. To the best of my knowledge,, I have no problems with my bones.

I wasn’t prescribed either calcium or vit d, but did, for a short while, take dissolvable calcium tablets. I subsequently decided that my diet was providing enough calcium.

[DorsetLady PMRGCAuk volunteer]

why we are advised to start taking omeprazole and alendronic acid before we are sure we need it

Simple answer, because it recommends that in guidelines.. and that seems to be one thing that doctors read!

Many don’t need either, so definitely wait for DEXA scan results re AA . As for PPI, unless you normally have gastric issues then just take Pred with food, or in a spoonful of yogurt.

[Koalajane]

I take Vit d3 and did before my PMR diagnosis due to being deficient. I think most people are recommended to take some d3

[HeronNS]

In Nova Scotia I was never offered stomach protection, but the pharmacy in particular makes a big deal about taking pred with food. Have never had stomach problems with pred.

There was talk of AA but I insisted on DXA scan first, which in those days only took a few months to get, and I was told I had "low bone mass" (osteopenia) and AA was recommended. I had done a lot of reading by then and refused, following my own plan to maintain bones, and a follow-up scan a year later showed I'd improved my bone density enough that the recommendation for AA was dropped.

healthunlocked.com/pmrgcauk...

[Fatsiajaponica in reply to HeronNS]

Interested in how you managed to do that without meds? Exercise, diet?

[HeronNS in reply to Fatsiajaponica]

I did put link at end of the reply

Here it is again:

healthunlocked.com/pmrgcauk...

[Fatsiajaponica]

Hi Cocoa, I'm taking the AA after very much consideration, listening to the bone professor at our PMR AGM and my GP who had PMR and osteoporosis as a relatively young man. He still takes AA in an effort to build his bones. My dexa scan came a few weeks after taking the AA so there would have been no effect of AA on the result, which thankfully was a good one. However, I decided that protecting my bones had to be a priority as fractures when you are older can actually be catastrophic, so that was my choice. The side effects sound frightening but they tend to be for those on regular infusions because of chemotherapy so much much higher doses than a tablet once per week. Also, the dexa scan is limited as a complete diagnostic tool.

I stopped taking the PPI as gave me chronic diarrhoea and refused an alternative, been fine taking it with breakfast and yoghurt. Good luck in your choices, we are all different.

[Bcol]

Hi there, I took Omeprazole for four and and a bit years without any problems at all. I also to my Pred, very early, with Greek Yogurt. Doc suggested AA but I asked for a DEXA scan first, that came back very good, and it wasn't suggested again. Doc also organised DEXA scans every two years all of which came back ok. However, recent investigations do show that DEXA's arn't as reliable a test as we thought., so it has to be your decision.

[CocoaChanel]

Thanks to everyone who shared here. It’s really useful to read about your experiences - helps to form a clearer picture in my mind. I’ve decided not to take omeprazole or AA. I was, previous to my diagnosis, taking various supplements so am continuing with that but have increased Ca, D3, K2, omega3, to maximum safe dose. I cut down drastically on carbohydrates a few years ago and stopped refined sugar products totally at the same time. The one thing I’m doing new is stopping all alcohol - haven’t had any alcohol since my diagnosis. I haven’t seen alcohol mentioned much re PMR. Does anyone have any info/advice?